Study: Nearly half of patients would withhold data from providers

Nearly half of patients participating in a trial looking at patient control of the medical records withheld clinically sensitive information from some or all of their care team.

The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health (formerly Wishard Health Services) conducted the six-month trial involving 105 patients at a primary care clinic. Patients were allowed to designate who could see their records, including information on sexually transmitted diseases, substance abuse or mental health.

Patients were able to hide some or all of their data from some or all providers--and 49 percent of them did. However, healthcare providers were able to view the hidden data, if they felt the patient's healthcare required it, by hitting a "break the glass" button on their computer screens, according to an announcement.

While patients strongly favored control over their records, providers had mixed reactions. In the trial, 54 percent of providers said patients should be able to control who can see their electronic health record data; 58 percent said restricting providers' access could be harmful to the patient-physician relationship; and 71 percent said withholding data in the EHR would have a negative impact on the quality of care.

The five research papers from the trial, including a point-counterpoint, make up the January 2015 supplement to the Journal of General Internal Medicine.

The growing ability to collect different data sets on patients has been both a curse and a blessing for the industry.

Since recommending that social and behavioral data be included in EHRs, the Institute of Medicine has a committee working out exactly which pieces of information it considers most relevant to health. It has winnowed its recommendations down to 11, including educational attainment, financial resource strain, stress, depression, physical activity, social isolation, and intimate partner violence.

However, a provider's use of an electronic health record can cause a patient to clam up for fear that the data won't be secure, according to a study in the Journal of the American Medical Informatics Association (JAMIA).

In addition, data segmentation poses a problem in EHRs, with teen privacy a particular challenge. Providers, however, worry that without segmentation capabilities, patients will be reluctant to divulge facts about themselves that could have a vital bearing on their care.

To learn more:
- read the announcement
- here's the point-counterpoint